Research Project information
Principal researchers: Munira Khan & Dr Lisa Bunn
Institute: University of Plymouth
Cost: £89,862.48 over 36 months
Start Date: 1st of February 2020 (no cost extension granted until December 2023)
What are the researchers proposing to do?
This project aims to provide the foundations for therapy research into ataxia telangiectasia (A-T). A large team of parents, academics and clinicians who are interested in A-T research have been formed called the ATeam. This team will work alongside and support a PhD student, Munira Khan, in reviewing the existing research around A-T therapy management (i.e. nurses and allied health professional therapy management of A-T) and summarise these findings. These findings will help inform guidelines for A-T therapy management for nurses and allied health professionals. Findings from this literature review will be shared with A-T specialist centres to be considered for the next edition of the A-T guidelines when they are reviewed.
The team then plan to develop a child and parent held set of notes, to help monitor the child’s experience with A-T and share this resource with health professionals and researchers, if required.
The third activity of the project will be to develop a home-based programme of exercises with an interactive group element. To explore how feasible, it is to do something at home that could target improvement of ataxia or other priority A-T problems that children experience, such as recurrent chest infections. This stage of the research will hopefully lead onto a larger research trial to properly explore how effective the home-based programme is for children with A-T.
A-T is typically managed with regular monitoring and medical intervention when secondary problems such as chest infections or diabetes occur. Physiotherapists, occupational therapists, dietitians, speech and language therapists, nurses, social workers and other allied health professionals currently have little A-T therapy-based guidelines on which to base their management plans. This is especially needed when conditions, such as A-T, are so rarely encountered by community-based, non-specialist ataxia healthcare professionals. This project aims to produce an online open-access set of guidelines to inform nurses and allied health professionals of what could be done to manage A-T. We then aim to contribute much needed new evidence to the guidelines by designing and initially testing the running of a clinical trial of a home-based therapy for children with A-T.
How will the research be done?
Research duties will be shared by the ATeam but will be led by PhD student Munira Khan and her Supervisors including Dr Lisa Bunn who is the principal researcher of the project. They will be working alongside A-T specialists / allied professions at the A-T children’s clinic in Nottingham. The research will take place over three years, as soon as key findings are established, these will be shared with the A-T community.
How could it make a difference to the lives of those affected by A-T?
There may be no direct benefit to the lives of those affected with A-T but by undertaking the project, the team aim to achieve the following benefits:
- Up-to-date information about how best to manage the condition with the input from the full multi-disciplinary team of health professions will be made publicly available. This could help to make sure that care received by people with A-T will be more equitable and consistently better informed. It will also aid healthcare professionals who do not have expertise in A-T to more efficiently make clinical decisions and advise management plans.
- Notes held by persons with A-T or a designated person will help to share information about changes that are significantly related to A-T and meaningful to the person and family concerned. It could provide more effective communication of any special needs relating to A-T and could better empower individuals with A-T in management planning overall.
- A home-based therapy may or may not be deemed feasible by the end of the project.
If it is feasible and children and families are happy with the design, this will help to inform future research exploring the effectiveness of the delivery of this home-based therapy. This could help inform the management of A-T in the longer term. If not feasible this new knowledge of why it is not feasible will still be helpful to researchers and healthcare professionals. For example, by understanding why a therapy did not work, was not enjoyed, or was felt to be unhelpful, researchers and healthcare professionals will have a clearer understanding of what they should avoid attempting in the future. By involving children, young people and adults with A-T throughout the study, the ATeam hope to give the design of the new home-based programme the very best chance of being feasible in the first instance.